Does anyone else feel like time is standing still at the same time as they feel time is flying by? No?? Must just be me.
Because seriously, folks, some days it feels as though time is standing still as I wait for a transplant.
But at the same time, dialysis has segmented and shortened my days so much that it feels as though they're are slipping through my fingers. Wake up, coffee, work, exercise, shower, dialysis. Repeat. This little routine doesn't leave much room for spontaneity because the thought of how I fit in dialysis always seeps in (which usually ends up stopping anything spontaneous from happening). I am my own ultimate killjoy. I feel like (at least during the weekdays) I only have a couple of hours to do anything when I get home from work. That may not actually be the case, but in my brain that's how I feel. These problems aren't new, and I'm certainly not the only one that faces them, but that still doesn't mean I wish they weren't there.
I wish I didn't have to empty the damn dialysis drain bag every freaking morning.
I wish I didn't have to tear down the machine.
I wish I didn't have to stay on top of insurance crap (yippee...a new year and new problems).
I wish I didn't have to stay on top of making sure my dialysis supplies get delivered (which they still haven't)
I wish I could easily pick up and go somewhere for the weekend (the key word being "easy").
I wish I didn't have this tube hanging out of my stomach.
I wish I could get all of the damned adhesive from the tape off of my side (what the hell is this stuff made out of???)
I wish I didn't have to watch what I eat.
I wish they would FREAKING LABEL THE AMOUNT OF PHOSPHORUS ON ALL FOOD.
I wish.....I wish......I wish.
I wish this wasn't my story.
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Transplant / Living Donor Info for me (edited)
I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I&#...
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So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well. HOWEVER....if you're blood type is NOT O+, there... -
I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well My first blood press...
I'm in a very similar place in my life to you. I'm 37 years old and I was diagnosed with end stage renal failure in August 2014 when I was 29 weeks pregnant with my second child. I put off dialysis for a bit but now have my PD catheter in place and will begin training in early march. I am of course impatiently waiting for transplant. Waiting for my life to begin again. I'm sometime very positive and sometimes very angry.
ReplyDeleteThanks for writing this blog.
Hey Jenner! I'll admit that I'm angry a lot. I'm angry that I didn't get a chance at having more children most of all. I'm not sure what you're situation is leading up to dialysis, but I have to admit that I feel healthier right now than I have in the last year or so. It's a significant difference in how I feel physically, which affects me emotionally. I'd love to keep in touch with you and see how things are going as you move forward. Training is a big nerve-wracking, but 2 weeks in to doing it yourself at home and you'll wonder what all the fuss was about :)
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